CRPS Research Effort in Chicago Off To A Good Start

CRPS Research Effort in Chicago Off To A Good Start

By Ed Coghlan

For people who are fighting Complex Pain Regional Syndrome (CRPS), this past weekend in Chicago may have been an important time.

Physicians and patient advocates gathered for the weekend to discuss their experiences in the use of Ketamine to treat CRPS which occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale

One of the goals of the meeting is to identify a way to treat CRPS that is acceptable to a broad number of physicians who can then gather data. It sounds like they had a good start toward developing something .

“The consensus protocol, which I am tentatively calling the Ketamine Infusion Reference Protocol (KIRP) needs editing and further refinement before we develop a prospective, multi-center, observational cohort study of the safety and efficacy of KIRP,” Dr. Peter Moskovitz told the National Pain Report.

Dr. Moskovitz is Clinical Professor of Orthopaedic Surgery and Neurological Surgery at George Washington University and serves as Chairman of the Board of Directors RSDSA (Reflex Sympathetic Dystrophy Syndrome Association).

RSDSA Executive Vice President Jim Broatch was also thrilled at how much was accomplished this past weekend.

“This was a very important meeting of clinicians and researchers to begin the work of crafting a reference protocol for the use of IV ketamine to treat refractory CRPS. Although ketamine has been in use as an anesthetic to treat pain since the 1960s, too often insurers deem it as ‘experimental’ and refuse to pay for it,” Broatch said. “It was a powerful, hope-filled meeting.”

For patient advocates like Gracie Bagosy-Young who is a CRPS survivor, the weekend was inspirational.  Bagosy-Young gave a talk to patients on Sunday that gave a simple message: “you can do nothing, or you can do something.”

It resonated with CRPS survivors who attended.

“This is why I do what I do,” she explained. “I don’t want anyone to feel that same desperation that I did. If I can alter one person’s loneliness each day, then that day was worthwhile.”

The use of Ketamine, which is a generic, has been around for a while. But since it is generic, no drug company will sponsor the research, which is very expensive. The RSDSA will most likely explore some government grants- like with the National Institutes of Health—or private foundation funding to expand the research.

For now, it appears the strategy is to develop the consensus protocol and have doctors use it and collect data.

For CRPS patients, it’s a great start.

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Authored by: Ed Coghlan

There are 11 comments for this article
  1. Donna Rubinetti at 7:53 am

    In response to Ms. COLLINGWOOD. I feel so bad for your daughter. I too have full body crps. Make sure she has a good pain mgmt doc who knows about this syndrome. My neurologist didn’t help at all.

  2. Michele Johnson at 4:58 pm

    Donna Rubinette,
    Sorry… I had out patient treatments. Lidocaine does absolutely nothing, we don’t use that. And no to the LD naltrexone. She did want me to try that prior to treatment but I didn’t want to.

  3. Michele Johnson at 4:49 pm

    Donna Rubinetti
    I had 2weeks of four days a week, four hours a day. Followed by several months of two days a month four hours a day. However I got a virus (cough) and have missed two months. Prior to missing treatments I did very well. I know if it wasn’t interrupted it is a total of 16 infusions. Followed by booster months if or when needed. Hope this helps you. 💛

  4. Miss Dawn collingwood at 3:41 am

    I’m not sure where to start my 13 yr old daughter has c.r.p.s and really struggles day to day I hate seeing her like it she could hardly walk her heads pounding then I have her sayi5 she can take it much longer she has a specialist nurology invoved cahms children mental health team we just need her to be free from this horrible pain hope you can help .x

  5. Teresa Streb at 9:01 pm

    I have suffered greatly with RSD. My doctor finally wrote me out of work disabled because not only did I suffer unbelievable pain, but bruising, swelling, open soars, and passing out completely from touch that progressed to at anytime, anyplace. Inspite of my healthy, active lifestyle, I’ve ended up w/ Breast Cancer, Tumors in my Pancreas, DVTs and am now on 24/7 O2 due to 4 large saddle pulmonary embolisms that went thru my heart and into my lungs… Yet, I’ve been turned down time and time again from collecting the Disability Retirement Insurance, I faithfully paid into. Can anyone please help me? I don’t have the strength to fight RSD and the long list of illnesses that have followed due to it.
    BTW, I worked as a Legislative Aide and would like to advocate for sufferers like myself. What have I got to loose?

  6. Donna Rubinetti at 12:10 pm

    Michele Johnson :
    Can you tell me what worked for you, i.e., how many infusions, inpatient or outpatient? Do you take LD naltrexone? Thanks.

  7. Donna Rubinetti at 11:46 am

    I have had 11 sporadic ketamine infusions so far but have had no relief. Three of my treatments have included lidocaine. I have full body RSD /CRPS. My pain level is out of control. I feel as if I’m on fire and have severe allodynia. I’ve also had Calmare therapy which did not work. I feel desperate. Can anyone give me hope to hang onto? Suggestions??? Thank you.

  8. Melissa at 6:41 am

    Is it possible that this drug may also help with fibromylatia? I’m not sure 🤔, but it appeared that some of the pain is what we also face daily.

  9. Michele Johnson at 6:11 am

    I’ve been in treatments since July of this year. And it has been a lifesaver. There have been days when my pain level is a FOUR!Yes a four from a Ten. Some days it was over ten before I started receiving my treatments. I have suffered with this monster for almost Twenty years and this has been the best decision I have made.

  10. Dave at 5:51 am

    This conference reflects the fact that we so not have the right stuff to tackle wicked problems like CRPS. There is a great lack of motivational intensity in medicine when it comes to neuropathic conditions and they are overconformed to one dimensional models that aren’t focused on preventing or curing. Instead researchers are only too happy to accept the belief that RSD is unpreventable and a lifetime condition. They have a petty vision that allows them to justify getting suboptimal results and requires little mental or moral effort on their part.
    They wont experiment with new models or adaptive research treat to target, layered treatments or combining different treatments for rsd in series or simultaneously.
    What they promise is extremely slow progress and to keep the expectations and hopes of people with rsd low. And yeah they can tell me all about dbs of the aic, acc, vpl, or the role of hmgb1 or MiRNA or AMPA, DAMPS, p53, reengineered herpes virus, frequency specific microcurrent, Beclin1- I am not impressed.
    Its time to dramatically pick up the pace in pain research and kick in the rotten door of dated suboptimal models that researchers cling to and promote with the big lie technique to promote. I care too much for people in pain to be spellbound by dated paradigms and researchers who are unwilling to break their heads open to create the symbols of a new day.
    Its time for researchers to pick up the pace dramatically in neuropathic conditions. Use adaptive interventions and treat to target- you can activate the kynurenic pathway and use inert gases and do nerve transfers, triptolides, mitoQ. with tung or manaka acupuncture simultaneously or in combination Go large or go home.

  11. YVETTA BARBEE at 4:56 am

    Its a good treatment, like all it doesn’t work for everyone. But it saved my life. Yet Drs and some hospitals because I ask for treatments. Won’t even allow me in there clinics. Because of it, so I don’t understand! It helps me

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